A-Z

Systemic Vasculitis

Challenges of getting to a systemic vasculitis diagnosis

This page covers:
  • Becoming concerned and seeking help for symptoms 
  • Feeling listened to or dismissed after seeking help for symptoms
  • Different routes to a systemic vasculitis diagnosis
  • Perseverance in getting to a systemic vasculitis diagnosis
Systemic vasculitis needs to be identified and treated as quickly as possible. However, it is not easy to diagnose because it is rare and has a variety of possible symptoms.

Becoming concerned and seeking help for symptoms

People spoke at length about the series of events leading to a vasculitis diagnosis. From when they first noticed a change in their health, it had taken some of them years to get to that point, while for others it was months or even weeks. 
 
 

For Wendy, early symptoms of vasculitis were “so minor that it didn’t seem worth bothering the doctor.”

For Wendy, early symptoms of vasculitis were “so minor that it didn’t seem worth bothering the doctor.”

Age at interview: 56
Sex: Female
Age at diagnosis: 53
AAV (GPA)
SHOW TEXT VERSION
EMBED CODE
PRINT TRANSCRIPT

I think the thing to say, I’ve written down some thoughts about it, [laughs] it is very complicated so it is hard to know where to start, but I think the thing to say first is that before I was diagnosed, I had some experiences that I now recognise as being leading up to the vasculitis diagnosis, but none of them were ones that you would really take a lot of notice, I had odd days where I was completely exhausted, and I had, I had days when – oh, I had a sore nose, [holds nose] that’s right. And it was just so minor that it didn’t seem worth bothering the doctor about. And then I did get a really runny nose, and I was at the doctor with something else and I said, you know, “This runny nose is a bit of a problem, and it doesn’t seem to go away. And I haven’t got a cold.” He said, “Oh, well, have some Beconase,” so I had that and that didn’t make any difference.

And so, when it started really kicking off, I had no idea, you know, what was happening to me.

 

Holly’s early vasculitis symptoms were so “obviously very strange” that she knew she had to see a doctor.

Holly’s early vasculitis symptoms were so “obviously very strange” that she knew she had to see a doctor.

Age at interview: 24
Sex: Female
Age at diagnosis: 19
AAV (GPA)
SHOW TEXT VERSION
EMBED CODE
PRINT TRANSCRIPT

So, I was first diagnosed with vasculitis in November of 2015 when I was 19 years old. I was in my start of my second year of university I was in a History of Art degree, and I went from being unwell with first my initial symptoms to then actually being diagnosed within about four weeks’ time. So, it was quite a short length of time that I was actually unwell to then finally being diagnosed.

I kind of initially when I was first unwell it was very strange, I basically started off with having pains in my arms and I tend to describe the pain as being it sort of felt like, like my bones were aching and this slowly moved from my arms into my hips and my legs and my feet and it sort of progressively got more and more painful to walk, and when I was sitting down in lectures, for example, I would get up after an hour of sitting down and I could, I could barely walk and it was a struggle to walk to and from lectures, I was visibly walking with a limp, and it was obviously very strange at the time, I was like, “This is, this is strange, I’m 19 years old, what’s going on here? This shouldn’t be happening.”

So, I think the first thing that I did was I went to a walk-in centre at the hospital because it was a Friday afternoon where it was, it was becoming to the point where it was incredibly painful and obviously the GPs aren’t open on a Friday afternoon, you can’t get an appointment Friday afternoon, so I thought, “This can’t really wait until after the weekend.”

 
Among the people we spoke to, the first changes in their health were often subtle or easily put down to something routine. Diane had swollen legs and an insect bite from a holiday, and thought the fatigue, aches and pains which came after were “just work stress, it’s just normal.” Lynn initially “made a whole load of excuses” for why her hips and back were sore on holiday, such as not sleeping in her own bed. Nicola at first “put off going to the doctor’s” as she felt her symptoms could be explained by stressful life events, being perimenopausal, and walking a lot on holiday. Although Steve’s symptoms built up quickly, he thought, “Oh, I’ve got another seasonal bug, it’ll go away, no need to bother the doctor.” 
 
It was also common for people to use over-the-counter medication before they consulted a healthcare professional. Months before Salma and Claudia first went to their GP, they felt like they always had a cold. Salma used Nurofen and Claudia recalled, “I used to take paracetamol like candies all the time, no effect.” When she first suffered facial pain, Roberta “tried all the usual, Sinutab, nasal sprays etcetera; they weren’t working.” 

Feeling listened to or dismissed after seeking help for symptoms

On seeking help, people told us that GPs often treated their symptoms in a routine way – for example, prescribing antibiotics or steroids for infections, or drugs to reduce high blood pressure or inflammation. They also provided reassurance. Isabella, for example, was told that a swelling in her neck might be the result of steroids prescribed for a chest infection, and thought, “Och well, I’ll be fine in a week or two.” 
 
 

Before Nicky’s vasculitis was diagnosed, she told her GP she couldn’t live any more with “diabolical” mouth ulcers. She left in tears when the GP prescribed mouthwash.

Before Nicky’s vasculitis was diagnosed, she told her GP she couldn’t live any more with “diabolical” mouth ulcers. She left in tears when the GP prescribed mouthwash.

Age at interview: 57
Sex: Female
Age at diagnosis: 48
Behçet’s syndrome
SHOW TEXT VERSION
EMBED CODE
PRINT TRANSCRIPT

Right, well, [sighs] I've only been diagnosed with the Behçet, Behçet’s, I always pronounce it wrong. I think it was about 2011-ish that I finally got a diagnosis. I’d suffered with just diabolical mouth ulcers since probably my early to mid-20s. 365 days a year I would have a minimum of about 10 ulcers in my mouth, the roof of my mouth, my tongue, sometimes down my throat, it was just awful. And I just lived with it.

And then as I got older it got worse. The, I just, it was really, really bad. And I went to my doctor one day and, and I said to her, I said, “Look, I just…” because they were all down my throat, I could barely swallow. I said, “I can’t live with this anymore.” And she was beyond useless. She sat probably as far away as that wall is, shone a torch in my mouth and said, “Ooh yes,” she said, “The best thing for that is Corsodyl mouth wash. So, I’ll give you a prescription.” And I just looked at her and I said, “Corsodyl mouth wash?” and I tore the prescription up and I walked out. And I was in tears.

Anyway, I had an appointment with my dentist, just for a routine check-up and he had often commented on the amount of ulcers that I had. And this was only two or three days after I’d seen the doctor and I, he looked, took one look in my mouth and he said, “My god,” he said, “You've got to see your doctor.” I said, “Well, I just have.” Relayed the story. And he said, “Well, you can’t go on with this,” he said, “I will refer you.” So, to this day, I’m probably the only person on this planet who says that I do love my dentist [laughs]. Because if it hadn’t been for him, I would still be suffering.

 
As people’s symptoms worsened, they made multiple visits to GPs or hospital consultants. Lynn, Dean and Jane X spoke warmly of how kind and helpful their GP had been, but Gail had the opposite experience. Charlie felt “shrugged off” by ENT (ear, nose and throat) doctors and Peter began to feel that doctors had “given up on me.” Lynn, Angharad and Diane were frustrated when doctors suggested that their physical symptoms were a result of anxiety. People told us that feeling they had not been listened to or believed could leave them thinking that something important was being missed, struggling with their mental health or losing trust in doctors.
 
 

Before getting a vasculitis diagnosis, Lynn was devastated to find out that some healthcare professionals didn’t believe her symptoms were real. She went to discuss this with her GP.

Before getting a vasculitis diagnosis, Lynn was devastated to find out that some healthcare professionals didn’t believe her symptoms were real. She went to discuss this with her GP.

Age at interview: 54
Sex: Female
Age at diagnosis: 50
Behçet’s syndrome (atypical)
SHOW TEXT VERSION
EMBED CODE
PRINT TRANSCRIPT

[Tearful] And when I reflect on that now, I think what it was and what was so important to me, was that people believed me. That belief in me and my symptoms, because it was really hard for me to believe in them. Because what degree of arrogance did I need to think that I knew better than these medical professions that I’d seen? So, to keep that when the little voice in the back of my head was telling me that, that, you know, “Just say none of this is real, Lynn, just say you have manufactured this.” So that wee voice at the back of my head was there anyway, and to hear that from people, was, was absolutely devastating. And where do you go with that?

So, after that, after the thing with the psychiatrist and my rheumatologist saying that, I went to see my GP and I took my husband with me. And. So my GP gave me 40 minutes that day, and what he said to me was, “Lynn,” he said, “I can think of less than five occasions in my whole career” – and he’d been a GP for about 30 to 40 years, he said, “Where I have said to a patient that their symptoms are psychosomatic and in their head,” and he said, “And I’ve made sure when I’ve said it, that I’ve been right.” He said the problem is very, very difficult to disprove. Because we talk about evidence-based medicine and whatever, don’t we? You don’t, you can’t get evidence, it’s like, people feel that they can say that to you when they, when they run the tests that they have at that moment in time, and think about things and whatever, and they can’t find an explanation of what happens to you, so therefore the default is - and the default may be more in females of a certain age because I was, you know, when all this started I was perimenopausal and then, you know, I was menopausal at that time, you know? So, females of a certain age or just females, that it’s okay to say yes, this is - “Essentially, this is in your head,” without evidence to back that up, or evidence, just, “Our tests are negative, and we can’t explain this,” and that becomes the evidence. And how do you dispute that?

And you know, and I said to my GP at the time, “If there is any way that I could live with my symptoms, I would,” because I’d need to be a masochist to put myself through this, to keep on searching for answers, to go and see people, to go and have these consultations.

 

Before she was diagnosed with vasculitis, Dawn felt that no-one was listening to her.

Before she was diagnosed with vasculitis, Dawn felt that no-one was listening to her.

Age at interview: 54
Sex: Female
Age at diagnosis: 43
AAV (GPA)
SHOW TEXT VERSION
EMBED CODE
PRINT TRANSCRIPT

Well, I was interested when you were earlier, speaking about it and quite often it sounded as if you had to be quite assertive? You know, you said, “It was only after I demanded a certain thing,” you know, whether it was a biopsy or a second opinion.

Yeah, yeah. Well, I knew nobody was listening to me, and I knew I, I was deteriorating. Yeah, if I hadn’t demanded this biopsy - although my nose had collapsed by then so maybe they would’ve eventually have come to a diagnosis. Because it is a process of elimination, isn’t it, with all these diseases and they have to get, do these first before they make that decision.

So, it’s very hard. You know I was annoyed with my doctors, furious with my doctors, that they’d misdiagnosed me for two years. And it was only that I asked to be put through to the ENT department as well. You know, after two years of being ill. So yeah, I had to demand everything all the way through really.

And I think, you know, when you go now you have to take notes and you have to research what it is, you know, I think you’ve got to be pretty clued up now, but I think that’s the same for anyone now when they go for a hospital appointment, that they know what they want to say and what they want to ask and go for a second opinion if you’re not happy with that.

I find it very hard to trust doctors now, which is why I acted so quickly when my daughter started to develop ENT symptoms. And I find it very hard to let my kids go to doctors appointments on their own. “Did you ask this? Did you ask that?” you know [laughs]. Very hard.

 
Sometimes people spoke about how family, work colleagues or friends had supported them when they felt they were not being heard. For example, when she was in hospital, Mo’s father-in-law (a retired GP) urged doctors to listen to what she was saying about her symptoms being connected. 

Different routes to a systemic vasculitis diagnosis

When Isabel and Nicola first sought help for their symptoms, their GPs recognised the potential for vasculitis. The investigations that led to Jeremy’s vasculitis diagnosis were prompted by a routine blood test, although he recalled “no sense of urgency” at that point.
 
 

Isabel’s GP saw signs of giant cell arteritis (a type of vasculitis) and sent her quickly to rheumatology.

Isabel’s GP saw signs of giant cell arteritis (a type of vasculitis) and sent her quickly to rheumatology.

Age at interview: 76
Sex: Female
Age at diagnosis: 74
GCA
SHOW TEXT VERSION
EMBED CODE
PRINT TRANSCRIPT

[Laughs] I wondered what on earth had happened to me. Just all of a sudden, my husband had to help me to get out of bed. It was like polymyalgia. And I was really, was very sore, [laughs] so I managed to get a quick appointment at the surgery, and I got a young doctor, I think just starting. And she thought it was that and she said, “I’m going to get the senior doctor to have a look at you.” So, she passed me on to the senior doctor in the practice. And he agreed that steroids, which she had suggested, was the right thing to do.

So, I attended him every week, I had to get blood tests taken and he was watching the inflammation on the computer. And the steroids, oh quickly got rid of the pain, it was very good. But I was left with headaches. Every night, I was sitting up with headaches.

So after, I think it was four, five weeks, he said, “I’m going to get the local hospital, I’m going to refer you down there.” So, I got a quick appointment, that quick I said to him, “I think I’ve got a cancellation [laughs], I’m going in Monday. Nine o’clock.” He says, “No, I asked for the urgent appointment for you.”

So, I saw the consultant and she immediately gave me a scan, so that was done right away, and I had a consultation with her.

 
Among the people we spoke to, however, it was common for the route to a vasculitis diagnosis to be more complicated.
 
 

Before getting a vasculitis diagnosis, Melissa remembers being passed from person to person until “the buck landed with rheumatology.”

Before getting a vasculitis diagnosis, Melissa remembers being passed from person to person until “the buck landed with rheumatology.”

Age at interview: 22
Sex: Female
Age at diagnosis: 18
Behçet’s syndrome
SHOW TEXT VERSION
EMBED CODE
PRINT TRANSCRIPT

Yeah, and eventually found a therapist that I did like and things started improving with my mental health, and this therapist wrote a very, very strongly worded letter to my GP who had sort of been ignoring me for years, and wrote a list of all the things that I’d had to change in my life, and that I felt I couldn’t do anymore, and sort of the impact it’s having on me, and that it was not fair that I didn’t feel listened to, that sort of even if medical professionals couldn’t do anything I should’ve at least felt some sort of empathy from them, which I didn’t at the time.

Yeah, so my GP got this letter, and sort of the result from that was a long list of referrals to different consultants, so sort of gastroenterology, gynaecology, rheumatology, sort of the full list, because the other issue is that we didn’t really know what system these things belonged to?

I was starting to get my first genital ulcers at the time, so whereas before it was all sort of, “Go to your dentist, go to your dentist,” it was suddenly, “Oh, maybe this is dermatological.” Yeah, so that, that was sort of the first time that I was taken seriously, and something actually came of it in terms of my care. Obviously, the dental hospital were great but they mostly gave me topical stuff, which didn’t really help.

So, some things came and went like dermatology. They, they had some useful ideas like, spraying asthma inhalers on the sores, as sort of a steroid treatment, which is quite creative, but it was sort of, “We don’t know what this issue is, we don’t think it’s to do with us,” and sort of passed me on to the next person.

I had an endoscopy and a colonoscopy, again, didn’t show anything, sort of, it’s not a gastro issue, so I was passed on to the next person. Eventually sort of the buck landed with rheumatology, and my first experience of rheumatology was really not positive. And by this point I was regularly seeing the dental hospital and I was talking a lot to the consultant there and he told me about this illness called Behcet’s syndrome, that might suggest the sort of the link between the mouth ulcers I was getting and the genital ulcers I was getting.

 
As Melissa found, parts of the search for a diagnosis could be like going from pillar to post. Roberta described going back and forth between rheumatology, neurology, her GP and accident and emergency while they debated her diagnosis. Lynn described this process as “the multidisciplinary merry-go-round where no one is looking at you holistically; you go to one person to look at one thing and someone else is looking at another thing, but they’re not looking at you as a whole.” 
 
 

Getting his sinuses drained gave Grant temporary relief but underlying vasculitis meant the problem always came back.

Getting his sinuses drained gave Grant temporary relief but underlying vasculitis meant the problem always came back.

Age at interview: 34
Sex: Male
Age at diagnosis: 31
AAV (GPA)
SHOW TEXT VERSION
EMBED CODE
PRINT TRANSCRIPT

Well, basically, it started, I would say, around 2014. When I was getting symptoms, more so of head pain, kind of in the right side but, which, turned up it was, it was sinusitis. And there was kind of ongoing ear problems, I had grommets and T-tubes fitted just to try and, it was all kind of linked with the ear, nose and throat, so.

I was back and fore a few times to a private hospital. And, and to deal with the sinusitis side of things. Which, they were draining the sinuses, I believe, and it was helping, kind of temporarily, maybe for, maybe four to six weeks. But then there was always a reoccurrence, reoccurrence. And this went on, like I say, for probably three to four years if not longer, but we’ll say about three to four years.

And, then from there, things kind of, in-between then, I was up still constantly going to work but it was quite it was, I would say it was genuinely quite hard but I was doing my work, but I, I did feel –in-between this, I just kind of felt lifeless, just quite fatigue.

So, so trying to get on with it was quite, was quite annoying. It wouldn’t just happen, as in, it was constantly there. And it wasn’t just something that came on, like, when I wasn’t doing something I enjoyed. Because I remember being on family holidays even, things like that, and even, maybe things like at a water park and I said, “I have to go home,” to try and just, to get, like, I thought about daylight, I went through loads of different scenarios in my head, thinking, “Is, is it daylight? Is it things that were just triggering my sore head?” but we couldn’t get to the bottom of it, really, so. But then it moved on, and in 2018 when I got diagnosed, it actually came from my right eye was, was closing over, which prompted me to go to my local GP.

And then from there I got taken into the hospital in [city], obviously, and they kind of, they picked it up from there, I believe, just from a blood test.

So it went, it basically went like that, and from there the, I was in hospital for around, I think it was just shy of three weeks, they were doing loads of different tests and things like that, but, and then obviously they confirmed it was vasculitis.

 
Like Grant, people often talked about part of the “journey” to a vasculitis diagnosis as if they had been stuck in a loop. Angharad was told her recurring symptoms were likely to be a blood clot until she reached a point where, “I had no time for this blood clot sort of story because it was something I’d gone through so many times and it, you know, no evidence of that.” Mo, Dawn and Charlie were repeatedly prescribed antibiotics for ear, nose and throat problems, while Gail had repeated surgery for polyps in her nose. 

Perseverance in getting to a systemic vasculitis diagnosis

Unsurprisingly, many people we spoke to felt that perseverance had been important. Mo and Sharon kept “going back” to healthcare professionals, Jane X and Richard had been “determined,” Marie “kind of stamped my foot a wee bit,” and Brenda pleaded with her doctor to be admitted to hospital. Charlie, Gail and Lynn were clear that going back repeatedly when they felt so ill was challenging but, as Melissa said, “You’re sort of desperate to get the help that you need.” 
 
 

Katy took photos to show doctors that the rash which kept coming back wasn’t eczema.

Katy took photos to show doctors that the rash which kept coming back wasn’t eczema.

Age at interview: 29
Sex: Female
Age at diagnosis: 27
Urticarial vasculitis
SHOW TEXT VERSION
EMBED CODE
PRINT TRANSCRIPT

I then got referred to dermatology, this was a good few years into it, and they did a skin biopsy on a bit that there was the rash, I think it was a punch biopsy? And it came back that it was eczema. So, I’m not sure, the doctor said that he thought it was just eczema and I needed to put creams on, but I knew that there was something different because when I get this rash, it would be almost like a demon was in my body, kind of. It would be hot, it would be, like, it wasn’t itchy to touch, it was sore to touch as in, like, like a bruise, and it would stay for days. Like, the rash would go down but then I would be left with, like, just bruising.

So, this went on for about four years. It was never something I did, I could never pinpoint exactly why it was doing that. And then I got referred to a different dermatology in a different area and I went to see him, and he, I showed him all the pictures because, like, throughout my journey I would take pictures of it so that, like, I knew that it wasn’t eczema. Like, I’d had eczema for my whole life and it’s completely different. Like, you could put creams on, you could do anything, and it wouldn’t take it away? It seemed to hit every single part of my body before it would go away, like, it would start on one bit and then go right through me, and then once it had hit every single bit of my body, it would go. So, he, as soon as I got there, he said to me, “I think it’s urticarial vasculitis you have.” And my mum’s actually a nurse, and she had said all along, “I think that’s what you’ve got,” because we obviously did our own research. But it took this one dermatologist to say, “No, I think this is what you’ve got.”

 
As part of persevering, people often talked about gathering “evidence.” Jane X, Gail and Dean’s wife took photos of things like skin rashes, blood or pus to show to their doctors. Richard completed a symptom checklist from a voluntary organisation in case it was needed to back up what he was saying. 
 
Sometimes people told us how others had helped them to persevere or had persevered on their behalf. 
 
 

When numerous appointments were “going nowhere,” an advanced nurse practitioner pushed for Charlie’s symptoms to be taken seriously and urgently.

When numerous appointments were “going nowhere,” an advanced nurse practitioner pushed for Charlie’s symptoms to be taken seriously and urgently.

Age at interview: 28
Sex: Male
Age at diagnosis: 27
AAV (GPA)
SHOW TEXT VERSION
EMBED CODE
PRINT TRANSCRIPT

I think one example was, for me, at early stages of having different symptoms that were seeming quite acute and overt and more than that you would expect for someone with an infection. And I went into my GP surgery and was seen by a advanced nurse and it was a really important point for me because she looked, observed these symptoms and thought that something really clearly seemed wrong here, in that the repeated appointments - numerous, numerous appointments at the GP surgery with different doctors - were just going nowhere and, really, clearly something else had to be done. So.

She made a very in-depth evaluation of all the symptoms over about 45 minutes and then after that, she then, while I was in the room, was calling up the hospital and the specific department and was then explaining these things through and saying, “I really think that there’s something funny going on here, please could you, kind of let, could you allow it, kind of bring him in this afternoon, and to be to take all the paperwork that I’ve done and then kind of see what you think about this.”

 
Wendy and Gail’s colleagues and friends urged them to keep going back to their GP. It meant a lot to Lynn that her GP “didn’t understand what was happening but was willing to facilitate me.” 
 
Some people mentioned how they tried to work out what might be going on so they could find a way to fix it. Jane X had spells of trying a gluten or milk-free diet. Katy said that she used “I don’t know how many creams, potions, bath stuff. I even stopped eating foods. I did loads and nothing stopped it.” Before he was diagnosed, Grant bought prescription sunglasses as he wondered if daylight could be triggering his symptoms. 
donate
Previous Page
Next Page